On January 1st, The New York Times website prominently featured a substantial piece of investigative journalism about a relatively new screening test that’s now being administered to more than a third of pregnant women in the United States. The article by Sarah Kliff and Aatish Bhatia — 2500 words plus some spiffy graphics — is titled: When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong.
As presumably intended, controversy ensued. The Times published seven letters on January 8th, carefully selected for balance. Most were, overall, supportive of the article while raising relevant concerns that had been omitted, especially about “the common assumptions about disabilities that these companies exploit.”
Unfortunately, some commenters on Twitter either failed to read the article carefully or failed to empathize with the women struggling to understand the test results. “Seems overblown,” wrote Stanford bioethicist Hank Greely (who does tend to default to that position). Greely acknowledges that the “psychological impact on the parents can be a real problem,” but says he’s “sure” that the companies and obstetricians stress the need for follow-up with screening tests. He references no evidence for this assertion.
There were, however, constructive and important reactions, notably from genetic counselors Robert Resta (emeritus) and Katie Stoll. Both pieces are worth reading in full. Resta concedes that the use of “wrong” could be seen as problematic, but focuses on the deeper questions that the article did not even attempt to address, such as: Should we test prenatally? What criteria should be used to decide what conditions should we test for, and why? “Realistically, with a few exceptions, is there any purpose beyond selective termination?”
He stresses the need for “soul-searching exploration with partners and care providers” and does not overlook the fact that “many patients will misinterpret, forget, and misunderstand most of the technical information” presented to them.
